S P R I N G
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A Report on Your Investment in Hope
Hope Cause for
N. Scott Adzick, M.D., M.M.M., with Charlotte, 14 months, who was diagnosed at CHOP before birth with a giant omphalocele, which CHOP surgeons repaired after she was born.
A message from
N. Scott Adzick, M.D., M.M.M. Dear Friends, Our team of surgeons, obstetricians, nurses, researchers and others in the Division of General, Thoracic and Fetal Surgery at The Children’s Hospital of Philadelphia performs miraculous deeds every day. From the outstanding survival rates achieved by our trauma surgeons to the lifesaving and life-changing procedures performed before birth each year in the Center for Fetal Diagnosis and Treatment (CFDT), we maintain the highest standards of safety and healthcare and are always striving to surpass them. I am excited to share this year’s report on the Division with you, our most dedicated supporters, because it shows how your generosity makes so much of this remarkable work possible. I am incredibly proud to lead a division that attains excellence in so many ways, so often, and remain extremely grateful for your partnership in turning miracles into regular occurrences — redefining amazing accomplishments into standards of care that patient families demand and that we expect of ourselves. In these pages, Kendall and Mike Heath share their very moving story about how the CFDT provided unexpected but crucial care for them when they received heartbreaking news: a diagnosis of a fatal birth defect in their unborn child. The compassion they encountered at Children’s Hospital helped them through the most difficult of times, and they and their family have partnered with us to expand the supportive care available for other families of children we unfortunately cannot save.
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You will also learn how Ed Doolin, M.D., saw a dire need for surgical care in Guatemala and in a few months rallied volunteers and raised funds to help provide it. The good they did in such a short time is inspiring, and their efforts were so successful, they intend to repeat them this year. The vision of generous donors and families like the Heaths, combined with the expertise and dedication of caregivers at CHOP, allows the CFDT and the Division to continue to exceed the expectations of parents, referring physicians, and others year after year. Thank you for partnering with us to deliver the best care available anywhere, to create new treatments and therapies, and to advance pediatric surgery around the world. It is because of your support that we are able to continue the proud tradition of innovative surgical care that started with C. Everett Koop, M.D., whom we lost this year and to whom we remain forever grateful. Above all, thank you for your enduring commitment to the children and families we are privileged to serve before birth and beyond. Sincerely,
N. Scott Adzick, M.D., M.M.M. Surgeon-in-Chief Chief, Division of General, Thoracic and Fetal Surgery Director, Center for Fetal Diagnosis and Treatment C. Everett Koop Endowed Chair in Pediatric Surgery
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CFDT Experts Write Entire Issue of Journal
News Briefs
N. Scott Adzick, M.D., M.M.M., an internationally prominent pioneer in fetal surgery as well as Surgeon-in-Chief of The Children’s Hospital of Philadelphia and director of the CFDT, was guest editor of the February 2013 issue of the journal Seminars in Pediatric Surgery, which was entirely devoted to advances in fetal surgery. Adzick previously took on this editorial role for the same journal in 1993 and 2003. Adzick and the article authors, all current or former members of the CFDT, described innovations in imaging modalities, surgical techniques and instrumentation, insights from basic science, and improvements to therapy grounded in experience and practice — including a landmark clinical trial of fetal surgery for spina bifida. “The presentations reflect the philosophy of one center, gleaned from two decades of clinical and experimental work,” Adzick wrote in his preface to the special issue.
Conjoined Twins Separated In November, formerly conjoined twins Allison and Amelia Tucker were successfully separated in a seven-hour surgery by a 40-person multidisciplinary team led by surgeon Holly Hedrick, M.D. Following specialized prenatal care at the Center for Fetal Diagnosis and Treatment (CFDT), the girls were born on March 1, 2012, in a planned c-section delivery in the Garbose Family Special Delivery Unit, the world’s first birthing unit exclusively for mothers carrying fetuses with known birth defects. At birth, they were joined at the lower chest and abdomen, sharing their chest wall, diaphragm, pericardium and liver. After delivery, Allison and Amelia spent their first seven weeks of life in the Harriet
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Above: Formerly conjoined twins Allison June and Amelia Lee Tucker, pictured here with their parents and the CHOP team that cared for and separated them.
and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) before moving to a surgical step-down unit where they stayed as they were prepared for separation surgery. It was the 21st time that The Children’s Hospital of Philadelphia has separated a pair of conjoined twins. Until Allison’s discharge on Dec. 17, the twins had spent their entire lives inside Children’s Hospital. Amelia, who required a longer recovery time, stayed at the Hospital into the New Year, but now the Tuckers are all home in New York, happy and healthy.
Sharing CHOP’s Expertise The Surgery Advanced Practice Nurses led two conferences this past year. In October, a two-day conference, Care of the Surgical Neonate, was held to provide continuing education on exciting and innovative care of the surgical neonate from prenatal diagnosis through postnatal management and long-term follow-up. The conference was attended by neonatal nursing specialists from more than 50 major medical centers across the country. In November, the 10th annual Pediatric Surgical and Trauma Nursing Conference was held for more than 175 nurses who came from as far away as Texas. Topics included preparing for disasters, pediatric pain management, pediatric brain injury, pediatric thyroid disorders, and a number of other pediatric surgical conditions.
CFDT Adds Two New Physicians The CFDT added two new members in 2012: Maternal-Fetal Medicine Specialist Juan Luis Martinez-Poyer, M.D. (above left), and General, Thoracic and Fetal Surgeon William Hughes Peranteau, M.D. (above right). Prior to joining CHOP, Martinez-Poyer served as a maternal-fetal medicine specialist at Northwest Perinatal Center, a provider of comprehensive medical services for high-risk pregnancies in Portland, Ore. He also served as a visiting physician at the Harris Birthright Research Centre for Fetal Medicine in London’s King’s College Hospital and chief of Obstetrics and Gynecology at Three Rivers Health in Three Rivers, Mich. His areas of interest include prenatal diagnosis, fetal therapy, multiple gestations and fetal cardiovascular hemodynamics. Peranteau completed his residency in general surgery at Brigham and Women’s Hospital in Boston and a fellowship in pediatric general surgery at CHOP. He also served as a research fellow in CHOP’s Center for Fetal Research for four years, investigating the role of in utero bone marrow and stem cell transplantation for the management of congenital hematologic disorders such as sickle cell disease.
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Celebrating Our Families Fetal Reunions
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n 2012, the Center for Fetal Diagnosis and Treatment (CFDT) held its 16th annual Fetal Family Reunion. More than 1,300 people from 18 states across the country attended the event, reuniting with the physicians, surgeons and nurses who made such a difference in their lives.
The 2013 reunion will be held Sunday, June 23. For more information, visit fetalsurgery.chop.edu/reunion.
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Below: Mark Johnson, M.D., the Center’s obstetrical director, pictured here with Deylan, who was born with a lung lesion, and his family. Bottom: Owen, who had fetal surgery for spina bifida, and his family, pictured with Center Director N. Scott Adzick, M.D., M.M.M.; nurse coordinator Sue Spinner, M.S., R.N.; and social worker Marty Hudson, M.S.W., L.S.W. The family traveled from their home in North Carolina for the Philadelphia family reunion.
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he CFDT traveled to Florida for its first-ever Fetal Family Reunion Road Trip for former patients and their families on Sunday, March 3, 2013. The family event took place in Clearwater, Fla., and included a trip to a Phillies spring training baseball game! Below: 16-year-old Roberto Rodriguez Jr. was the Center’s first-ever fetal surgery patient in 1996. Roberto, who now aspires to be a professional baseball player, threw out the first pitch at a Phillies spring training game at the Center’s Florida family reunion in March.
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Howell created the model for these leadership nurses to take ownership of patients’ care and provide a constant point of contact and source of support for all stages of their treatment. APNs provide a full range of services to general surgery patients, including pre-operative anesthesia and surgical visits, and wound and tube care. They also answer all parents’ questions about their child’s pre- and post-operative care needs. Even with her initial high hopes, Howell never could have envisioned how the program would grow and evolve since then. Kali Rhodes, M.S.N., R.N., C.R.N.P., General Surgery advanced practice nurse, tends to 4-week-old Ryan, prenatally diagnosed with a congenital cystic adenomatoid malformation (lung tumor) by the Center for Fetal Diagnosis and Treatment.
Unique Expertise The Surgical Advanced Practice Nursing Program
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early 20 years ago, N. Scott Adzick, M.D., M.M.M., asked his colleague Lori J. Howell, M.S., R.N., to leave San Francisco and move across the country to help him set up a fetal surgery program at The Children’s Hospital of Philadelphia. Howell agreed, but on one condition: that she would also be able to establish a Surgical Advanced Practice Nursing Program. An advanced practice nurse (APN) herself, Howell knew firsthand how critical these registered nurses with master’s degrees and advanced training are
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to families and their sick children, to whom they provide direct patient care, education and consultation while also conducting research. “The idea stuck in my head that if we were able to bring that expertise, that compassion, that skill set closer to the bedside, it would elevate the care of children in need of surgery,” says Howell, co-founder and executive director of CHOP’s Center for Fetal Diagnosis and Treatment (CFDT), and director of the Surgical Advanced Practice Nursing Program.
The APN has become an integral part of the care delivered in the CFDT, the Garbose Family Special Delivery Unit, the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU), outpatient clinics and surgical inpatient units. In response to decreasing numbers of general surgery residents and the medical field’s recent institution of the resident 80-hour work week, Howell’s army of APNs have now assumed primary care of pediatric surgery and trauma patients, from admission to discharge, on the inpatient surgical units and in the outpatient setting. “We provide continuity of care for families, who are often dealing with multiple specialists throughout their time at the Hospital, and also serve as a point person for the care team,” says Tracy Widmer, M.S.N., R.N., C.R.N.P., who leads the surgical APNs in the N/IICU. “If we attend a delivery or admit a baby, we follow that baby throughout their course in the N/IICU. We know what the baby needs and communicate those needs and the fragility of the patient to the bedside nurse and other members of the care team.” Surgical APNs bring a unique balance of pediatric or obstetric medical expertise and supportive care, taking a holistic approach to managing every aspect of patients’ care, from
“For so many of our patients who are far from home, it’s nice for them to have a person who knows the big picture and knows how their lives are being affected by what they’re going through.”
— Susan R. Miesnik, M.S.N., C.R.N.P., a member of the CFDT’s surgical APN team. There are a total of 34 APNs in the CFDT, general surgery and the N/IICU.
before their surgeries until they are able to go home. They take health histories, diagnose chronic and acute problems, interpret X-rays and lab results, and most importantly, address the parents’ and children’s needs. The result is expedited care, more timely discharge and decreased readmissions. “All those things add up to increased patient satisfaction,” says Karen Barnaby, R.N., M.S.N., C.R.N.P., who leads the team of general surgery APNs at CHOP. “This program embraces the vision that Dr. Adzick and I share that nurses are incredibly important to the care these children receive,” says Howell. “It’s fulfilling to see how it has grown and to see the positive impact this team has on families.”
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treatment. When the team first arrived at the surgical center, they were greeted by a standing ovation from families, some of which had traveled as long as 10 hours to get there. Equipped with two operating rooms, a 12-bed pre-op area and a four-bed recovery area, the team triaged 74 patients and performed a total of 64 outpatient surgeries, many of which were life-changing procedures years overdue.
Ed Doolin’s team at the Centro de Salud Barbara surgical center in Guatemala.
Operating Overseas
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3,000-mile airplane flight isn’t the typical commute to work for CHOP surgical advanced practice nurse Antoinette Drill, R.N., M.S.N., C.R.N.P., but then, this was not a typical workweek. In August 2012, Drill and a team of 20 other clinicians from CHOP and other area hospitals traveled to Guatemala to treat children desperately in need of surgical care. The trip was the brainchild of Liz Doolin, a master’s degree candidate in global medicine at the Keck School of Medicine of the University of Southern California and daughter of CHOP surgeon Ed Doolin, M.D., who worked with her to bring pediatric surgeries to a place where they would have the most impact.
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Organizing such a trip was no small feat for the busy surgeon. He had to recruit a multidisciplinary team, locate a facility that could support their work in Guatemala and secure funding. The team set up a grassroots fundraising page on giftofchildhood.org and raised more than $35,000 within four months to pay for medical supplies, travel, living accommodations and food for team members and patients. The effort received a generous gift from the Lynn Saligman League and nearly 100 donations from family members and friends of caregivers on the team.
One teenager had a type of benign skin tumor that’s usually about the size of a pea but that, left untreated for years, had grown to the size of a grapefruit and was very painful. One 4-year-old child had lived since birth with a tumor that had grown so large she was unable to sit down. A 28-year-old man who had lived since age 2 with a hernia that prevented him from working impressed on Drill the fate many of these children might have met had the team not made the trip. “When you saw these older men come in with hernias … they were large, scarred and painful,” recalls Drill. “If you could avoid that for someone, that’s a win right there, getting them care so they’re not 30 years old and can’t walk … or work.”
The mission was the first experience of its kind for many of the clinicians on the team. It opened their eyes to the conditions children in underdeveloped nations live with and opens up a new type of outreach for CHOP. “This was extraordinary and unusual and very exciting, but it shouldn’t be,” Doolin says. “CHOP has the largest pediatric footprint in the world. This will be a regular occurrence.” Planning is now well underway for this year’s trip, and with donor support, Doolin hopes to expand the trip to twice a year and add specialists in infant nutrition, plastic surgery, urology, and ear, nose and throat. “There’s no doubt that if this trip hadn’t happened, these children would not have been treated,” Doolin says. “This is an area where just a little support can have such a huge impact.” For more information and to support this year’s trip, go to: giving.chop.edu/goto/internationalsurgery.
Team members perform one of 64 surgeries.
Doolin enlisted the help of an organization called Partner for Surgery to serve as a bridge between his team and the children in need of care. Partner for Surgery spread word of the mission to people in the local mountain villages, where standards of living are poor and there is little access to medical
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Louise Schnaufer, M.D.
Her Teaching Lives On “To teach is to touch a life forever.”
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hat quote is emblazoned on a pillow Louise Schnaufer’s pediatric surgery trainees gave her in recognition of the many gifts of instruction, advice and support she gave to them. It was her educational philosophy and is now part of her storied legacy. Louise Schnaufer, M.D., was a pioneering pediatric surgeon who came to The Children’s Hospital of Philadelphia in 1971 as chief surgical assistant for C. Everett Koop, M.D., and remained until her retirement in 2002. She died in 2011 of complications from Alzheimer’s disease at age 86.
In 1995, still actively seeing patients and mentoring younger surgeons at 70 years old, Schnaufer also began to consider leaving another kind of legacy. While her teaching affected a generation of pediatric surgeons and benefited all the children they would go on to treat, Schnaufer ensured her impact at Children’s Hospital would extend beyond the people she could teach directly when she created the Louise Schnaufer Endowed Fellowship in Pediatric Surgery at CHOP with a generous gift. Endowments at Children’s Hospital provide guaranteed funding to a wide array of essential work, from specific areas of research to vital patient care and even social, emotional and financial support for families in need. The Schnaufer endowment ensures funding for an important and prestigious two-year pediatric surgery fellowship, helping Children’s Hospital recruit the most talented young surgeons and pass on years of clinical and academic excellence.
Louise Schnaufer, M.D.
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Schnaufer is an inspiring example for the young surgeons who are awarded the fellowship carrying her name. After graduating from the Woman’s Medical College of Pennsylvania in 1951, Schnaufer became the first female chief surgical resident at Union Memorial Hospital in Baltimore in 1955. In
the early ’60s, she helped establish the first pediatric surgical unit at The Johns Hopkins Hospital. She then completed her surgical fellowship at CHOP, assisting Koop with the first separation of conjoined twins at CHOP. As an attending surgeon at CHOP, Schnaufer made tremendous contributions to the care of children with life-threatening conditions through her skilled hands, her desire to innovate, her compassion and her teaching of aspiring young pediatric surgeons. Her teaching contributions earned her noteworthy recognition by her peers. In 1993, she was given the residents’ faculty teaching award by the University of Pennsylvania, and in 1999, the American Academy of Pediatrics bestowed on her its Arnold M. Salzberg Award, which recognizes outstanding mentorship of pediatric surgical trainees.
In 1974, Dr. Schnaufer was a member of the 23-person team that assisted C. Everett Koop, M.D., with the separation of conjoined twins Clara and Alta Rodriguez, pictured here, from the Dominican Republic. They were the first conjoined twins separated at CHOP.
“So much of what we teach is one-on-one in the operating room, and it was there that Louise was absolutely masterful,” recalls CHOP Surgeonin-Chief N. Scott Adzick, M.D., M.M.M., who had the privilege and pleasure of working with Louise during the last years of her career. “She was respected as a surgeon, as an advocate for the child, and as a teacher of residents in pediatric surgery. More than this, she was loved for her innately generous personality. Her life was well-sewn together with threads of kindness, compassion, dedication and unselfishness.”
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From Loss to Legacy Perinatal Palliative Care and Bereavement at the Center for Fetal Diagnosis and Treatment
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hen Mike and Kendall Heath learned at their local Washington, D.C., hospital that their unborn child had an extremely rare, fatal genetic birth defect, they were given conflicting information about the condition that affected their child and were encouraged to terminate the pregnancy. Heartbroken, the Heaths went to specialist after specialist in search of other options, but no one could provide answers about their child’s unique genetic syndrome until they came to The Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment (CFDT). “CHOP was not only familiar with our son’s condition, they had a completely different emphasis on what we were facing,” Mike recalls. “Even though they couldn’t fix the situation, CHOP understood we were going through a painful process and were determined to help us get the best outcome.” The Heaths formed an immediate connection with maternal-fetal medicine specialist and geneticist Nahla Khalek, M.D., who provided comfort, guidance and education on the condition. Khalek understood how important it was for the couple to have the chance to meet their son and get to say goodbye. The Heaths worked with Khalek and her colleagues in the CFDT to develop a birth plan that was consistent with their hopes and values, would give them as much time as possible with their son, and would assist them down the path of healing after his death.
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“It was a dimension of care we didn’t even know existed until we got to CHOP,” Mike says. Although the CFDT’s unique expertise and depth of experience has saved the lives of thousands of babies, about 20 percent of the families who receive an initial consultation with the CFDT will lose a precious child. In many cases, as with the Heaths, the physicians and parents all know early on that they will experience the loss of the child either before or shortly after birth. It’s an overwhelming experience that few hospitals are equipped to properly address. “The beauty of palliative care is that you have time to spend with your dying child,” notes Joanna Cole, Ph.D., who joined the CFDT a year ago as the nation’s only dedicated clinical psychologist for families coping with prenatally diagnosed birth defects. “Comfort care allows families the chance to spend the short amount of time that they may have with their child. It’s an opportunity to create lasting memories and precious moments to support death with dignity.” Mike and Kendall cherish the 37 minutes they had with their son, Paul, before he passed, as well as the support they received from Dr. Khalek for more than a year afterwards. “We were forever changed by having Dr. Khalek to turn to,” Kendall says. “Everyone should have access to the same type of care, expertise and compassion that we received.” Inspired by the support his daughter found at CHOP, Kendall’s father, Thomas Evans, donated to support the CFDT’s vision to significantly expand its palliative care services and establish
best practices that can be shared with other hospitals. In collaboration with the Heaths, the CFDT has created a new Perinatal Palliative Care and Bereavement Program to help ensure that personal support for families continues after the loss of their child. Supporting the CFDT in this way, the family says, has been an important part of their recovery. Their gift will be used to help hire a coordinator to lead the program in providing consistent care and long-term follow-up as well as connect families with programs within CHOP or their communities after they return home. It also sparked the CFDT to reflect on ways it could enhance its palliative care offerings further and establish best practices for hospitals nationwide. With added funding, the CFDT hopes to expand the program through a multiyear, phased plan addressing the full range of needs for families grieving the loss of a baby and producing the research that will allow palliative care and bereavement innovations developed here to spread throughout the country. Among the early goals
Above: Kendall Heath holding her son Paul’s tiny feet the day he was born. of the expansion are providing educational materials and support groups online for families, conducting mental health research to assist in parents’ recovery, and developing specialized comfort kits to help grieving mothers focus on self-care after leaving the hospital. “If this can be our son’s legacy,” says Kendall, “helping other families and other children, it makes Paul’s short life so much bigger and gives it meaning.” To join with the Evans and Heath family in expanding compassionate care for families experiencing the loss of a baby, mark your donation for ‘CFDT palliative care and bereavement’ and send it using the envelope in this publication.
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Looking Ahead Outcomes Research Will Drive the Future of CHOP’s Surgical Care
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he Division of General, Thoracic and Fetal Surgery has long been one of the best places for children to receive surgical care for a wide range of ailments. By all standard measures of quality and effectiveness, the Division, like The Children’s Hospital of Philadelphia overall, is a consistent leader. But one of the primary things that makes CHOP great is its insistence on looking ahead, challenging its world-class physicians and researchers to not only provide excellent care today, but to shape even better care in the future. With that ever-present goal in mind, leaders in the Division are exploring ways to study not just patient survival and immediate outcomes of the surgeries they perform, but to scientifically measure the long-term effects — to be able to definitively state whether children who receive a particular procedure face higher risks for other health problems in the future, for instance, or whether they might face identifiable challenges in their growth and development.
Charlotte, 2 years, born with a giant omphalocele, continues to receive long-term follow-up care at CHOP.
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Michael Nance, M.D., is helping lead the creation of a national pediatric trauma quality improvement program with the American College of Surgeons, and Peter Mattei, M.D., is using the organization’s National Surgical Quality Improvement Program database to study outcomes for general surgery patients.
N. Scott Adzick, M.D., M.M.M., chief of the Division and director of the Center for Fetal Diagnosis and Treatment (CFDT), has not only identified the effort as integral to the future of healthcare delivered to fetal patients, but he and his wife have personally invested in seeing the vision realized by making a generous donation to the effort themselves. “The measurement of surgical outcomes is crucial for progress in fetal and pediatric surgery,” Adzick says. “We envision rigorously applying quality monitoring and assurance, establishing accountability, and allocating and managing resources efficiently, among using other assessment features, to the management of birth defects — before, during and after birth — to improve outcomes, and thereby save and enhance the lives of our youngest patients.” The CFDT is currently one of the few programs in the world studying short- and long-term outcomes for conditions such as twin-twin transfusion syndrome, myelomeningocele (the most serious form of spina bifida) and congenital diaphragmatic hernia. Its vision now is to create a single resource for all data relating to patients with any kind of birth defect, drawing from existing but currently separate research, billing, genomic and clinical care databases. The goal is to learn how survivors of these defects fare in life expectancy and educational and occupational attainments, and whether they require special services or medical care later in life. By designing new research approaches and integrating all information relevant to children’s treatment, follow-up care and long-term health, the new Center for Birth Defects Outcomes in the CFDT will advance understanding of maternal and childhood outcomes, patient safety and the true value of therapeutic intervention. That knowledge will enable the team in the future to evaluate treatment options for new patients and to
choose the ones that they have shown will provide the best short- and long-term outcomes. “Early survival alone is an inadequate measure of the success and quality of treatment,” says Lori Howell, M.S., R.N., executive director of the CFDT. “This information will help us better counsel patients on what they can expect for their child’s health and development after birth. It will also help their healthcare providers make more informed decisions by providing a better understanding of care options and the science that supports them.” The Center for Birth Defects Outcomes will also link clinical data with genomic data from CHOP’s Center for Applied Genomics to predict which patients are at increased risk for complications and adverse outcomes after birth. It will also enable the development of more individualized, targeted therapeutic strategies that will improve patient care. Norma Rendon Sampson, M.S., C.C.R.C., manager of Clinical Outcomes Research for the Division of General, Thoracic and Fetal Surgery, says the move to long-term outcomes research will change practices throughout the Division. The infrastructure being created now — in the CFDT, the trauma program and general surgery — will advance the efficiency, quality and impact of Division research, leading to better treatments for kids, sooner. “Right now we’re able to do 15 to 20 clinical outcomes studies at a time by abstracting data manually. If we had this infrastructure, we could have 80 studies. Instead of looking at four or five diagnoses, we could be looking at all of the diagnoses in real time,” Sampson says. “And the outcomes we find will not only help us inform families, but also inform how we deliver care.”
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Hope on the Horizon Toward a Cure for Sickle Cell Disease
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he Center for Fetal Diagnosis and Treatment (CFDT) has helped thousands of families by treating their children’s conditions before birth: saving babies who would not have survived without early intervention and enabling others to lead vastly better lives as a result of care they received in the womb or shortly after delivery. But physician-scientists at the CFDT and the Center for Fetal Research are keenly aware of how many more children they could help and are constantly pursuing better treatments and new procedures to treat other conditions in utero. Alan Flake, M.D., fetal surgeon and director of the Center for Fetal Research, is closing in on a potential cure for sickle cell disease (SCD), and The Children’s Hospital of Philadelphia has launched a special campaign to raise the funds he needs to bring his revolutionary treatment to clinical trials in the next few years.
To promote the campaign and enlist supporters, Steve Burke, chief executive officer of NBCUniversal, and Alfred Liggins III, chief executive officer, president and treasurer of Radio One Inc., hosted an exclusive group of government, business and community leaders on the 51st floor of 30 Rock in New York City. The evening with CHOP leaders, surgeons, physicians and volunteers, titled “Hope on the Horizon: New advances toward a cure for sickle cell disease,” was eye-opening for many attendees. SCD is the most common inherited disorder in African-Americans, with 1 in 375 babies born with the disease. Named for the abnormal, sickle-shaped red blood cells that it creates, which cannot carry oxygen and often block small blood vessels, SCD causes debilitating pain, chronic fatigue, organ damage, and sometimes fatal strokes and heart attacks. Children born with SCD face a lifetime of anxiety and uncertainty, requiring frequent blood transfusions to prevent strokes and often three or four emergency hospitalizations each year to treat infections and other complications. Many will not survive beyond their 40s. The only known cure for SCD currently is a risky bone marrow transplant that is usually considered worse than the disease, which is why Flake’s work is so exciting — his procedure, the culmination of nearly 30 years of research, promises a true cure.
Sickle cell disease patient Montana, 18 months
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Flake is one of the world’s top fetal surgeons and a pioneer in operating on babies in utero. His groundbreaking treatment involves transplanting stem cells from the mother’s bone marrow —
where red blood cells are made — to her child, first early in the pregnancy when the fetus’ immune system will accept the mother’s cells as its own, followed by a second transplant after birth to cement the process. The baby will be able to produce normal red blood cells without any symptoms of SCD.
From left: Alan Flake, M.D., director of CHOP’s Center for Fetal Research; Steve Burke, CEO of NBCUniversal; Alfred Liggins III, CEO of Radio One; Steven Altschuler, M.D., CEO of CHOP; journalist Roland Martin; Kim Smith-Whitley, M.D., director of CHOP’s Sickle Cell Center
With charitable support, Flake plans to enter clinical trials for the procedure within three years, and he sees the potential for it to cure SCD as well as a broad range of related immunodeficiency disorders.
Committee and the Community Clothes Charity. However, $5 million is still needed to make Flake’s cure a reality.
Hope on the Horizon is a volunteer-driven campaign spearheaded by longtime CHOP supporters Darlene Logan, Steve Sanders and Judith Royal, with the goal of raising awareness of SCD and raising the funds needed for research into the disease and care of children suffering from it. Philanthropy has driven Flake’s efforts at the Center for Fetal Research, starting with the leadership giving of The Albert M. Greenfield Foundation and continuing through other private donations and support from volunteer organizations like the CHOP Women’s
“I am proud to be able to contribute to this effort,” Liggins says. “I am convinced CHOP will make this cure for sickle cell disease a reality in the near future, and it is thrilling to be a part of this important work.” With the help of volunteers and donors, CHOP soon may be able to offer children born with sickle cell disease healthier lives, without its debilitating and life-limiting symptoms. To learn how you can get involved to cure this devastating disease, visit hopeonhorizon.org.
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By the Numbers
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he Division of General, Thoracic and Fetal Surgery has grown in every program since 1995, reaching more children and families in need. In 1995, the Division performed about 1,700 operations. By 2012, Division surgeons were averaging more than 4,000 annually. The following tables and charts tell the story of that growth through the lens of individual programs. There is information for every year of the Center for Fetal Diagnosis and Treatment, which opened in 1995, and the Garbose Family Special Delivery Unit, which opened in 2008. And the increasing percentage of surgeries performed with minimally invasive techniques is noteworthy not only because such surgeries typically have shorter recovery times and better outcomes, but also because it reflects an increase in CHOP surgeons’ expertise; they now offer more than 100 procedures with a minimally invasive approach.
Fetal Referrals and Evaluations 1995 – 2012 Year Referrals Evaluations 1995 39 1996 143 1997 207 1998 293 1999 393 2000 495 2001 661 2002 755 2003 703 2004 685 2005 815 2006 930 2007 965 2008 1,039 2009 1,065 2010 1,157 2011 1,364 2012 1,380
8 56 90 121 166 214 345 302 377 416 534 635 673 732 798 910 999 1,035
Total 13,089 8,411
SDU Deliveries 2008 – 2012 Total = 1,291
400 350
357
300
Fetal Surgeries 2008 – 2012 Total = 442*
250
*Fetal surgeries from 1995–2012 Total = 978
100
318 283 242
200 150
134 91 61
78
88
81
2008
2009
2010
2011
50 0
2012
Conditions Treated at the Center for Fetal Diagnosis and Treatment Neurologic Abnormality (21.74%) Defects Involving Multiples (17.19%) Congenital Heart Disease (11.37%) Miscellaneous (11.09%) Lung Lesion (10.47%) Genitourinary Defects (9.27%) Gastrointestinal Anomalies (7.75%) Congenital Diaphragmatic Hernia (7.05%) Neck Mass (1.94%) Sacrococcygeal Teratoma (1.79%) Hematologic/Immune Disorders (0.34%)
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By the Numbers
Locations With Care Provided By CHOP Surgeons
Hospital of the University of Pennsylvania
CHOP Ambulatory Surgery Centers: Voorhees, King of Prussia, Bucks County, Exton, Princeton, Atlantic County
Pennsylvania Hospital
Abington Memorial Hospital
CHOP at Virtua
Christiana Hospital
CHOP Main Campus
Trauma Program Statistics
Admissions Length of Stay (Days)
12
1,500 1,250
10
1,000
8
750
6
500
4
250
2
0
1990 1992 1994 1996 1998 2000 2002 2004 2006 2008 2010 2012
0
Length of Stay (Days)
Admissions
Our Lady of Lourdes Medical Center
Pennsylvania Bucks County Princeton King of Prussia
Minimally Invasive Procedures in General Surgery
Exton
1,400
New Jersey Voorhees
1,300
1,312
1,200
Delaware
1,100
1,114 1,070
1,000
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Atlantic County
2008
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1,061
1,065
2009
2010
2011
2012
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Rhonda, 24, traveled from Texas for care at the Center for Fetal Diagnosis and Treatment, where she underwent fetal surgery for myelomeningocele, the most severe form of spina bifida.
Endowed Chairs C. Everett Koop Endowed Chair in Pediatric Surgery N. Scott Adzick, M.D., M.M.M., F.A.C.S., F.A.A.P. Ruth M. and Tristram C. Colket, Jr. Endowed Chair in Pediatric Surgery Alan W. Flake, M.D., F.A.C.S., F.A.A.P. Josephine J. and John M. Templeton Jr. Endowed Chair in Pediatric Trauma Michael L. Nance, M.D., F.A.C.S., F.A.A.P. George Leib Harrison Endowed Chair in Fetal Therapy Mark P. Johnson, M.D., M.S.
Endowed Fellowships Louise Schnaufer Fellowship in Pediatric Surgery (clinical) David Stitelman, M.D. William Maul Measey Fellowship in Pediatric & Fetal Surgery (research) Jesse D. Vrecenak, M.D.
Board of Visitors The Board of Visitors is an appointed board of community leaders who believe in the mission of Children’s Hospital and are committed to advancing CHOP’s excellence in pediatric and fetal surgery by promoting philanthropic support, raising public awareness and providing volunteer leadership. Jami and Joel Friedman (Co-Chairs) Laura and Adam Epstein Ariele and Steve Gordon Kendall and Mike Heath
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Jesse Jantzen Mary and Jed Kelly Nora and Jeffrey Nazzaro
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Let Your Legacy Be the Gift of Childhood Jaidyn, 4 months, and his mom, Merissa, underwent fetal surgery for myelomeningocele. A few months later, Jaidyn was delivered in the Garbose Family Special Delivery Unit.
On the cover: Khloe, 7 weeks, had surgery for Hirschsprung’s disease when she was 6 weeks old.
Thank You. Our care, our research, our teaching. They all rely on gifts from Children’s Hospital supporters, now and in the future. Many of the most important and enduring gifts to CHOP have been legacy gifts. Including Children’s Hospital in your will or as a beneficiary of a retirement plan is one of the easiest ways to invest in the health and well-being of future generations of children. These gifts won’t affect your current cash flow and may even help reduce taxes for loved ones. If you have already made a planned gift to CHOP, thank you, and please let us know. We can help you designate your gift to a specific Hospital program, and we’ll invite you to join the Lewis Society, a select group of supporters who have included Children’s Hospital in their plans. Visit us at giftofchildhood.org/plannedgiving to learn more, or contact Tom Yates at 267-426-6472 or yatestg@email.chop.edu.
w w w. g i f t o f c h i l d h o o d . o r g
/plannedgiving
The Division of General, Thoracic and Fetal Surgery at The Children’s Hospital of Philadelphia was established by C. Everett Koop, M.D., in 1946 as the first pediatric surgical program in Philadelphia — and the second in North America. Throughout its long history, the Division has provided some of the finest, most compassionate multidisciplinary care in the nation, and has continued to pioneer advances to improve the lives of children for generations to come. The Center for Fetal Diagnosis and Treatment, founded in 1995 by N. Scott Adzick, M.D., allows us to dedicate these unparalleled resources to the care of babies even before birth. The stories of hope, innovation and progress within this report are possible thanks to the support of generous families. To learn about how you can help, contact Becky Rohtbart at 267-426-6529 or rohtbartr@email.chop.edu, or visit GiftofChildhood.org.
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The Children’s Hospital of Philadelphia is ranked No. 1 on Parents magazine’s list of Best Children’s Hospitals and shares the No. 1 spot on the U.S.News & World Report Honor Roll.